Relief

I had my follow up lung function test today. The previous one was just over a month ago, and it had dropped a bit from the previous time. It was a bit scary because there has been a few drops since Sept last year. It was 97% at the end of Sept, 94% in Dec, 92% in Feb, when I was a bit sick with Rhinovirus, and then last month it was 89%. So my Dr suggested I repeat it a month later. I haven't actually SEEN my Dr since the beginning of Feb due to Covid, but at least there is whatsapp. He didn't seem too concerned, but I was.

I had to do a Covid test last week, before being allowed to blow on the lung function machine. The results came out on Friday evening so did the lung function this morning. It was back to 93% FEV1% at least and 118% FVC! Yay! Feeling SO relieved!

The Comrades 10km was fun. I did another 10km yesterday with my mom. It's nice to slowly see some improvement!

My nephew is being super cute as always. So nice to be on the same property as them! It's been extremely cold this past week, and winter still has a long way to go. Although at least technically the days are getting longer again from today. 

2 years 7 months

Sunday marked 2 years 7 months with the new lungs. It was also a year since Chris and I decided to get divorced. It feels like a whole lifetime has happened in that year. Grateful of course for another month of easy breathing. I've really been enjoying running outside again. I'm even in a better spot now than I was fitness wise than before lockdown started.

I managed to have a lung function test done 2 weeks ago. I was 2 months after my previous appointment was supposed to be. I could only do the lung function test, and only after I had done a Covid test. My lung function was down a bit - FEV1 of 89%, FVC 115% (and has been down tiny bits at the last 4 check ups, so that's really annoying). It's such small drops that it's barely considered a drop, but with my history of rejection of the previous lungs it makes me anxious. So I have to have it repeated again in another 2 weeks' time. In the meantime I'm just trying not to think about it.

I had to go to the dentist on Tuesday morning, An old filling fell out while I was eating over the weekend, so had to have that fixed. Work is back to normal capacity, and Andrew is back from PE. It's nice to have small things return to "normal".

I'm loving the new home. Most of the stuff I've ordered online have arrived, and it's feeling very cosy. Also loving being able to do some gardening again. It's a pity that we're going into winter, but hopefully everything I've planted so far will look amazing in 3 months' time.

Don't have much else to say. Preparing to do a virtual 10km Comrades run thing on the 14th of June, so that's something to work towards.

Solitude

So South Africa is in lock-down since yesterday, for three weeks. We currently have 1187 cases and 1 death. I'm very happy with the way government has handled things thus far... shutting the country down early. You're only allowed out of the house for food or medical reasons. No walking/running outside even. As per my previous post, I've been self-isolating quite a bit before yesterday anyway. My sister and parents have been great with bringing me some groceries earlier this week. I'm in lock-down on my own, as I'm too scared to share a house with my family members who have still been going to work and the shops. I'll just be stressing all the time. So maybe later on once I know they're healthy I might move over to one of their places.

I do however think that CF, 3-week hospitalisations, post transplant isolation and being on the waiting list for transplants twice has prepared me for this. I've spent a lot of time on my own before. Even if I was able to see visitors, I was basically alone all the time. So I'm pretty used to and enjoy my own company.

My first vivid experience of being on my own was when I was in hospital for the better part of 3 months when I was 6 years old with pneumonia/infections. After that I was lucky to do IV antibiotics at home, so my parents were always there. Waiting for both my lung transplants also involved a lot of time spent by myself. When I was in rejection with my first set of lungs, I also had a few stints in hospital for 2 or 3 weeks at a time, where every night was spent alone. I don't sleep well in hospital, so watching series in bed till late at night is what you do! So this lock-down is WAY better than all of those times. No needles, no feeling like shit... in fact feeling super healthy. No fighting for every breath. No disturbances throughout the night. No 4am bloods, just peace and quiet. Feeling lucky.

I do however need to limit my time on social media if I want to stay sane. Apart from anxiety about my health, the amount of stupidity I see on Facebook and Twitter works me up! It KILLS me to see how dumb people can be.... and selfish. Along with all the fake news. I've been unfriending people and purposefully avoiding Facebook today.

It's going to be tough for me not to be allowed to run outside. It's really been keeping my anxiety levels down this past while. I went running in the driveway today... (there's this challenge where you do 2km per day in your garden for every day of the lock-down, and then you would have done 42km), and it actually wasn't too bad. It was sprinting in one direction, walking back, and repeat! I also did a workout with my dumbells, resistance bands, foam-roller etc. I'm definitely going to be gaining weight, but I just don't want to lose muscle too! I've worked hard at being where I am strength-wise.

I'm really nervous about the impact this virus will have on SA... just like everyone I suppose. I also wonder when it will be safe to go back into society again. Just because lock-down is over in three weeks' time or whenever, doesn't mean it will be safe from catching COVID_19. And seeing as this virus attacks the respiratory system, I'm REALLY scared of getting it. Especially since a lot of articles suggest permanent lung damage. Just thinking about it makes me feel short of breath! This isolation does help though. Let's hope that "This too shall pass"...

COVID 19

I figured this is a good time to do a blog post again! The world feels a bit crazy right now and people are (hopefully) spending much more time at home so they might actually read this!

Along with the rest of the world, and maybe even more so, I'm rather freaking out right now. I'm worried about all the things that could go wrong in this country with this virus, and with my health in particular. Just FYI, I've had one of the "normal" Coronaviruses before, and it was just like a cold. This one is obviously very different and the articles stating that it can cause real lung damage, resulting in the loss of 20-30% lung function scares me the most. A lot of other things surrounding it scares me too, but to me this is the scariest.

My appointment with my lung Doc was also indefinitely cancelled. In other words there will be no more normal check-ups for the foreseeable future. Only in cases of emergency. So I won't be finding out anytime soon if the drop in lung function I had about 6 weeks ago when I had Rhinovirus has recovered. This, coupled with the fact that in 2013 when my chronic rejection with the previous lungs started, I felt absolutely fine, and it was a "normal check-up" that showed a big drop in lung function, is causing some REAL anxiety for me. The only thing helping for it is running. I tell myself that if I'm not getting WORSE at the running, then my lung function can't be TOO BAD.  I managed to cut another 2 minutes off my 5 km time trial results last Wednesday. I'm doing it again tomorrow and REALLY aiming for a sub 40 min run! Mentally I need that right now. Thank goodness there is only like 10 people at the time trials and they all run way faster than me! I have upcoming gynae and dermatologist appointments that I will also most likely cancel closer to the time.

I'm trying to self-isolate as much as possible. I've cancelled my gym membership (Parkruns have also been cancelled), I'm only working from home (thank goodness I'm not at my old corporate job anymore!!!! This would never have been possible and I would have been exposed to like 500 people daily). I've done quite a bit of shopping in preparation for this "lock-down"... and spent a crap-load of money on hand sanitiser, gloves, alcohol surface cleaner, alcohol wipes etc. I've also had my chronic meds for the next month delivered last week, so I'm all stocked up there too. My family members are also very cautious, and basically avoiding me if they think they might have been in contact with someone who was not 100% healthy. My boyfriend (yes... I have a boyfriend... more about that some other day) is also working from home since today, and has given his domestic worked paid leave. So I'm trying hard not to get sick!

Lastly, I'm SUPER glad I went to the UK in December... at the time it was rather tight to go financially, and I was a bit worried abut the weather, but in hindsight it was absolutely the right thing to do, because I don't know when I'll feel safe to travel internationally again! It just reminds you again to live each day like it's your last! You never know what might be waiting around the corner.

Running and Rhinovirus

It's been just over a month since I've joined the Running Club. I did my 4th time trial tonight and I've managed to improve my time for 5km by 3 minutes so far. Really quite chuffed, it's becoming easier every week. I'm very far from being good at it, but improvement makes me happy! I've been working hard on my overall fitness and it's nice when you can at least see a change. No matter how small. A year ago my Achilles tendon was still a massive mess, so that's also a big improvement.

(My time when I did the Parkrun in Englad was better, but that wasn't at 1700m altitude and in the heat. So at least my Joburg time is catching up to my UK time!)

A tiny hiccup in my fitness goal has been a common cold, or Rhino Virus. Two weeks ago I was feeling a bit off-ish, with a sore throat. I had a lung check-up, and my lung function had dropped 3%. That's not a lot but I just felt bleh and had some phlegm in my lungs and sinuses. So my Dr ordered a throat swab, and I was very relieved to see Rhino Virus was the culprit, and not Coronavirus! Or any of the others on that list! You just have to wait it out and treat the symptoms, so didn't have to do anything about it.

I'm very excited to see my aunt Annelie tomorrow. She's the one I visited in the UK for Christmas. She's been here in SA to see my gran, and she'll be in Joburg for 2 nights. Can't wait! Picking her up in the afternoon. Looking forward to a great weekend.

Trying to make the most of the last few days of summer. There's a definite Autumn chill in the air when you wake up in the morning! Not a fan of winter.... We had a pool party at Brendan and Marius' house 3 weeks ago to soak up the last of the summer sun!

A third of my life - 12 years

Last week Wednesday marked 12 years since my first transplant. Exactly a third of my life so far. A third of my life with no constant mucus trying to smother you. No persistent lung infections. No problems with being underweight. No super disgusting cough or coughing fits where you can't catch your breath. And most of all, 12 years of not being dead. So much love for this donor family.

Those lungs also enabled me to have a successful second transplant. During my rejection they were stable, and allowed me to stay physically strong and reasonably healthy otherwise. So they really behaved very well.

But back to the present.... joined my local neighborhood running club yesterday, and the first run is tomorrow. Sooooo nervous. But I have to do this in preparation for the National games in June, as well as to push myself... otherwise I'm stuck in the same gym rut and struggle to push myself. I think I have breathing-related PTSD. As soon as I get too out of breath I feel like I need to stop because this is bad. Even though it's normal to get out of breath when you run! So I need to run for a bit longer before I give in to walking.

I shared the above poem on Instagram a while back, it's written by a CF guy who has also had a lung transplant. It's quite direct but touches me very deeply. I can totally relate.